My Story Now in Insomnia: 19%

So I said this blog was going to be a space of good health and all that… but the past couple days have been really hard so I’m just going to be blunt and lay it all out there.

I don’t ever want to return to that feeling of hopelessness the way I felt for months two years ago, but it’s pretty damn difficult. It really feels like the whole world is working against you in more ways than one.

I’ve been riddled with multiple ailments since I was a kid, and the one that’s affected me the most is my chronic lung disease. Sometimes you dig yourself into a hole thinking about what could’ve been, and how much easier your life would be if all you had to worry about was hustling and getting a job and all the common problems.

I am only left with a lung function of 19%, and am literally living life on the edge. Even on a day of not sleeping or overexerting myself or stressing out, I feel it immediately and need to take time off to just recuperate and rest.

When I was three, my mom and brother got really sick with pneumonia and I caught it as well. After what appeared to be a normal check up, I was suddenly hospitalized and sent to the emergency room, where I was in severe care for a few days. I remember looking over and seeing a black girl a bit older than me in a bed next to mine, and she smiled at me. I remember a few of these rooms, and even now when I smell alcohol and this weird hospital soap smell, it sends shivers down my spine. I remember days of just being surrounded by dark curtains, where all I had was a sad TV to look at with cartoons and other things I wasn’t really interested in, but being unable to ask anyone because it was late and all the nurses were tired and tending to other things… in addition to my having a tube put down my throat so I couldn’t speak. I remember someone occasionally coming over and asking me if I’d rather have a blue or pink pad to rest my IV on, and nurses cheering for me because I’d finally pooped after being bed-ridden for endless time. I remember some nurses crowded in my room watching TV, someone coughing, and one nurse offering me ice cream even though my parents freaked out later as some other doctors deeply believed it would adversely affect my breathing condition.

Even now, I find it ridiculous that the hospital was so unsanitary that they would allow nurses to cough in the rooms of at-risk children like myself who were easily exposed and heavily affected by any form of contagion nearby. I wondered if this was how I caught a virus that nearly killed me, weakening me so much that I could not leave the hospital for the next six weeks. It nearly completely ruined my lungs.

When I was finally able to leave the hospital, there were many sleepless nights where the silhouettes of my parents hovered over me, measuring my oxygen levels, feeding me some sort of Iron drink, and giving me breathing treatments. The first night back at home, I was so weak that when I wanted to seek my parents out, I dropped out of my bed and dragged myself to the edge of the stairs to call them out… I can’t believe I still remember this, and every time I feel the vulnerability of that helpless moment, I feel paralyzed all over again. I was chained to an oxygen tank for many years, and this eventually changed to a portable one that was difficult and heavy for me to lug around in my still limited capacity. I think I was finally able to get rid of it when I was about ten years old, but I was homeschooled completely until 4th grade.

My parents were Buddhist, but converted to Christianity when they prayed to God and I was able to leave Robert Wood Johnson. After 4th grade, I was still easy susceptible to the flu and cold weather, so I was homeschooled usually from November to beginning of April, and this pattern remained until college. This trend made it really hard for me to establish relationships with other peers, and I had more experience conversing one-on-one with teachers than anything. At an early age, self-doubt and loss of confidence started becoming apparent when I felt like my health and inconvenient conditions wasn’t understood by many people, and I felt often like I was very vulnerable and at the mercy of my teachers or other administrators. I experienced a lot of injustice where kids would walk behind me, laughing and taunting me to walk faster when I couldn’t and was so out of breath I couldn’t even defend myself. I often walked alone because I was slow and couldn’t keep up with other kids, and I felt awkward asking my friends to wait for me, especially with my backpack.

Painful experiences included one time, when I had a long-term pass that allowed me to arrive late to class past the six-minute mark since my pace was much slower. My sickness caused me to be absent for a couple days, and when I returned, during lunch period I walked the exhausting uphill path from building 100 to 800 to find my science teacher to make up a test. One of the hall monitor teachers who had a reputation for being an asshole gave me the most difficult time when I showed up and lacking a specific pass from my teacher allowing me to find him for the test. He drilled me on why I was in that building during lunchtime, and why I had arrived there about five minutes after the last bell rang. I explained to him that it’s difficult for me as I walk slower, and he relentlessly questioned me, asking me why and almost mocking me as if I were lying. I told him my teacher was expecting me for a test, and he allowed me to pass, saying I had better have that pass with me when I returned by him.

So there I was, so burnt out and oxygen-deprived, feeling like I had hiked up Mt. Everest, trudging on to my science room to make up the test. Alas, the teacher looks at me, surprised, and says he wasn’t expecting me to come immediately the day after my absence to make up the test, hence he didn’t have one prepared for me. I asked him for a return pass to lunch and told him about the man giving me a hard time. He gave me a sympathetic look and told me the teacher is well known for being a jerk, handed me a return pass, and sent me on my way. I was so disgruntled as I flashed the pass to the old jerk, and he had to squeeze in one last dig, asking me if I got my test done when there was no way I could’ve finished it in five minutes. I told him no, and he said “I told you so” as I began my trudge back to the lunch room.

Other times, there were students I became friendly with and considered friend-quaintances, only to have them turn around in their seats to stare at me in April to ask if I was a new student: in my absence, I had been easily forgotten as if I had never existed in their lives, and it hurt.

There were also gaps in my education where the time lapse in between transitioning from school to homeschooled caused some teachers to quickly skip over chapters in a hurry, whether they were lazy or whether it was to help me catch up as quickly as possible with my class, I will never know. Some asshole teachers were not nice at all, and when I first returned to my high school math class, I asked Mr. Lynch if I could take the quiz Monday instead of Friday since I had not had a chance to go over a chapter with anyone, and he said “We can discuss it Monday.” Monday, I came in, and he handed out the quiz. I went up to him to talk about it, and he said “You’re taking it today. We discussed it Friday already, what’s the problem? If you did the chapter’s homework then you should be able to take the quiz just like everyone else.” Needless to say, I didn’t understand a damn thing about sines and cosines, receiving a fat “U” for Failed, and unable to persuade him otherwise.

In the span of a few years, my old doctor had retired and I did not consistently visit a hospital in that time. In high school, my parents took me to see a Morristown Hospital doctor, then back to RWJ for Dr. Hussein, and finally now, to where I am a patient at UPenn.

To make matters worse, my parents fought often, and I still remember the many nights when I felt really alone, sick and depressed- I would huddle in my bed, thinking I was going to hear my parents fighting in the next room over, or my mom bursting into my room to dish out some of her anger. Other nights dragged on for probably months at a time where nobody spoke or communicated in the house, and I was forced to act as Owl Messenger to where my mom was holed up with her door closed, back to my dad where he was playing Freecell quietly.

My mom and I have a very complicated relationship. I understand all that she has sacrificed for me over the years, but she was also riddled with her own depression and issues, using me as her therapist and complaining about her past, my father, and her unsatisfactory life, often of which I internalized into blaming myself for existing and for burdening everyone. I felt so guilty and so silenced, and always worried that something was going to happen, and the whole house was always on eggshells or stepping on glass.

Over the years, our family has improved in many ways, and I went to see a therapist after my complete mental shutdown two years ago, and only then did things seem to start to get better bit by bit. During that time period, my ex broke up with me and I found out I may need a lung transplant. My parents were so worried about my getting too serious with a boyfriend, and freaked out, preventing me from living as normal of a life as I could for myself. All the anger burst out of me, and I had no room to tolerate anymore. For about two months, I was riddled with thoughts of suicide and sleeplessness. Every second in existence was agony, and I would cry and squeak out jokes at my best friend that I would be tempted to cut myself if I only knew where the veins were, or I would like to drown myself in the bathroom if only there was a bathtub and not just a shower head.

She came to stay with me a few nights to make sure I was okay at school, and probably saved my life, sleeping on the floor in my room and listening to me as I cried over and over again.

My mom has hovered over me like a helicopter parent, trying to shield me from all the bad while simultaneously making me paranoid and aware of a lot of negative things. I think depression runs in our family, and battling to gain happiness has always been a huge challenge. I have no doubt in my mind that a lot of the anxiety and depression I feel is related to her own draining energy, but I still love my mom and appreciate all that she has done for me- I just need space and my independence, and yet it seems impossible since I will forever need to rely on my parents for many things. Will I ever find a significant other to care for me unconditionally? My parents will not be around forever, what will I do then?

And honestly, as much as I want to wholeheartedly have faith that everything will work out, nobody knows for sure. There is so much in Christianity that both troubles me and gives me hope. But in all seriousness, why is there so much suffering, cruelty, negativity, and injustice in the world if there is a God? I need some sort of justification for this, and yet every time I’m in a really dark place, I pray. I can’t help it. Help me figure it out. Please.

So even now, it feels like I’ve accomplished nothing, and I’m just stuck here in a sad, sad limbo. But that’s not true, I’ve managed to gain some good friends in college, I graduated, and I need to believe that there is more to my life than what it seems like now.

Depression, anxiety, chronic lung illness (bronchiolitis obliterans), ear surgery, insomnia… what else? Occasionally, I will open up to a friend who asks about my story, and explain to them what I have. You will have people who respond in a really unhelpful, ignorant way, saying useless, vapid stuff like

“But you’re such an inspiration!”

Or am I just a fucking reminder that your life doesn’t suck compared to mine? or

“At least you’re not like, really poor and stuck in a Third World country where you cant afford medication,” or “Maybe it’s all in your head?” “C’mon, it’s not really THAT bad.”

No, and no. You don’t fucking know, so shut the fuck up, please. How do you talk about yourself honestly without sounding like you were seeking pity or victimizing yourself, or downplaying your challenges?

I so envied the college peers I was surrounded by, who only cared about partying harder and ending senior year with a bang, where their greatest conversations consisted of how embarrassingly drunk they got and how they were going to make it through exam week. I related more to other people of a different, more isolated temperament… and yet, I felt like I was constantly used by others because they knew I relied on and valued their friendship so much. Even now, I only have a handful of people who really understand me, or recognize enough not to belittle me, hover over me, or differentiate me.

I am hypersensitive to noise and get easily irritated… when I read Chopin’s biography, I really related to his character. Maybe it’s a symptom of people with lung/breathing issues, you’re always on edge, grumpy, and oxygen deprived, so it makes you whiny and irascible.

There are a million things I’m trying to accomplish, even though on the outside it appears like I’m doing nothing. Part of me feels a deep, deep despair as if there’s no point in grudgingly trying to figure out my future or my next step, and the other half is freaking out at my freak outs. So if you have any advice for me, I’d love to hear it. But only if it’s of substance. Please.

About Me

I like red pandas and the color orange. This is my stage jolting down thoughts about social and cultural issues, which include chronic illness, physical and mental health, the environment, feminism, race relations. Some in-between personal journaling.
Just wandering around trying to find my niche in the world